Today started off at Mott Children’s Hospital for Colten’s follow-up cranial ultrasound from his shunt placement on October 17th. After some other appointment switches, we also worked in his hip ultrasound today so we don’t have to drive down to Ann Arbor three times in 10 days. The radiologist was even nice enough to throw in a spinal ultrasound while he was doing Colten’s dynamic hip u/s. Guess you can/t have too many of those… Most of the preliminary findings look good and we will followup with the various docs when we bring Colten to “myelo clinic” on Thursday of this week. Clinic is setup for certain medical conditions requiring an array of docs and followups. U of M sets up an appointment time and you cycle through the various providers – in Colten’s case he will see six different specialists. More on this Thursday! For now though, a more recent picture of Colten’s back scar. Cannot believe how amazing it looks…
When we got home from Ann Arbor today we had two special visitors – Avery and her mom, Amber! When we were still in the NICU after Colten’s birth, our awesome PT, Dan, had the social worker (crazily enough – a student of mine from my previous job in the education association world!) contact a family with a daughter who has Spina Bifida and see if the mom would be up for chatting. I was given her contact information but at the time really had no idea the questions to ask or what else I was ready to hear. So I never contacted the family. Then in a series of twists we connected via a SB Moms group on Facebook.
It was amazingly comforting to talk with Amber – to share stories of similar experiences, frustrations, and hopes. It was great to hear her story, to hear Avery’s story. There was a weird comfort to sitting and talking with Amber. It renewed something in me and took me away from the dark thoughts of appointments, tests, braces, wheelchairs and shunts… and allowed me to see a vibrant little girl conquering the odds, and realize that Colten will do that very same thing. Avery is about 1.5 years old and was also treated for a myelomeningocele at Mott Children’s Hospital. Her level of defect is a little higher up than Colten’s, but her level of function is actually lower. So while she has motor control over her lower limbs, she does have some sensation areas that are non-responsive. She has had some other medical things to overcome in addition to the myelo and she’s a fiesty little girl with a laugh that just makes a smile spread across your face! Amber has been diligently blogging about her little lady as well. You can read their story here!
I’m not sure what else to say on this. I just know that I felt so wonderful after talking with Amber… It was just us and the two kids (Parker and Max were thankfully napping peacefully most of the visit). It was real life information, not doctor/therapist-driven information. It was reality, it was hope, it was comfort.
Thank you Amber and Avery!